INTERNATIONAL FACES OF PH

Denneys Niemandt, South Africa

When You Set Your Mind To It, Nothing Is ImpossibleFall, 2011

PH patient Denneys Niemandt (right) with his wife Sonja

My name is Denneys Niemandt, and I am a 52-year-old male from the beautiful city of Cape Town, South Africa. My journey with pulmonary hypertension began on a sunny Saturday in September 2006 when my wife, Sonja, and I went looking for a new family car. At the car dealership, I started feeling out of breath and experiencing tightness in my chest and pain in my right arm. I asked my wife twice why they were switching the lights on and off in the showroom, not realizing that I was having a blackout.

My wife took me to the N1 City Hospital where the doctors performed tests and my ECG showed abnormalities. They told my wife that I had had a heart attack and needed to see the cardiologist on duty. Fortunately, the cardiologist on duty was Dr. JP Smedema, who had experience dealing with PH in his home country, the Netherlands. PH is not well-known in South Africa and is often misdiagnosed.

Dr. Smedema did some intensive tests and told me that I had pulmonary hypertension and my right heart chamber was enlarged. At that stage, telling me I had PH meant as much to me as telling me I had a virus or minor illness. However, when he explained that PH is a very serious and terminal disease, it felt as if my world fell apart. My daughter was 15 years old and my son was 13, and I thought, "I will never see them become young, beautiful teenagers!"

I told Dr. Smedema that I had been in and out of the hospital over the last 20 years with pleuritis, pneumonia and cardiac arrhythmias. At one point, a specialist even told me it was all in my mind. This specialist told me to exercise more and to stop "thinking myself sick." At the age of 14, I was diagnosed with hereditary spherocytosis and a splenectomy was performed. Five years later, I had to have a cholecystectomy. Dr. Smedema wrote an article titled "Pulmonary Arterial Hypertension After Splenectomy for Hereditary Spherocytosis" in the Cardiovascular Journal of South Africa in which he concluded that my PH was brought on 32 years after my splenectomy. Apparently, microscopic emboli had formed in my lungs and that was the beginning of my PH.

That is how my life started at the age of 47 with PH hanging over my head. My wife and I Googled PH and, as you all know, it is only doom and gloom if you read about PH on the Internet. Luckily, Sonja works with the medical faculty of the University of Stellenbosch and she helped me do proper research about PH and make changes to my lifestyle. I also made contact with PH organizations in the United States and United Kingdom, where I connected with patients who had the same "dreaded disease."

It is not always easy for me, and the biggest challenge is that I used to be very active and now I get tired all the time. My youngest, Denneys, was 13 years old when I was diagnosed and is very active in sports. We used to play golf and ball games, but I had to explain to him that I could not do it anymore even if I wanted to, which frustrated me a lot. I got depressed thinking about my physical limitations and I had a difficult time controlling my emotions. The idea of taking so many medications was also overwhelming.

However, I eventually got more involved with other patients and with PHA and I decided there must be something positive to be gained from my disease. I am the current Chairman of PH South Africa (PHSA) and I am proud to say PHSA became a nonprofit organization in 2010.

My biggest dream for PH in South Africa is for it to become as well-known as it is overseas and to raise awareness of PH among the general public, medical professionals, the government and pharmaceutical companies. I also want to begin support groups in South Africa that can bring comfort and information to all PH patients. My message to other PH patients is to never ever give up, accept your condition and don't fight it. Be thankful for family; they sometimes suffer more than you!

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